World Autism Awareness and Acceptance Day: Focus on Independence

On this occasion of World Autism and Acceptance Day, what if we could make one wish that came true?

 

Go quickly and grab a piece of paper.

What do you want your child to achieve? Write it down!

 

I’d love to take a look at what you wrote!

I wrote ‘Independence and Happiness’

 

As our children grow older, independence becomes a major source of concern.

Independence would mean living independently, holding down a job (or a successful entrepreneurship or engaging in some meaningful work), engaging meaningful relationships and living a good quality life.

 

In Mohit’s case, some things are in place.
There is still a lot to achieve.

 

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

 

– Robert Frost

 

In my last article I spoke about substituting worry with action.

The mantra was: As in all things in life, do your best and then let it go.
No point in worrying about it.

 

If you’d also like your child to be independent – here are 5 pointers.

As much as I’m addressing these pointers to you, I’m addressing to myself.

 

1.Work on the core deficits (besides skills)

 

All of us started by working on skills- Gross motor, Fine motor, Building language etc.

We tend to forget the ‘core deficits’ or we think the core deficits will take care of themselves.
These questions will help you understand the core deficits of autism.

 

Does your child understand his/her role in a situation without being explicitly told what to do?
In an emotionally charged situation, can your child calm himself down, with your support? (Co regulation)

 

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Can your child stop himself or herself from inhibiting a harmful action or an obsessive thought process? (Self Regulation)

 

Many functions are related to your child feeling ‘competent’ or good about himself in a situation.
This leads to the building up of self. It gives the child personal agency. To be successful, our children need to feel competent.
Does your child feel competent? (Competence Development)

 

Does your child understand the impact of her actions on you? Does she take actions to repair the effect?
For example: your child may repeat the same thing 10 times, exhausting you in the process. Does she understand why she needs to stop and the impact it has on you? (Emotional Responsibility)

 

Life doesn’t hand us everything on a silver platter- many times we have to observe what is going on around us and take decisions based on that.
Does your child understand what he needs to focus on at any given point of time, when there are multiple things happening?
(Joint Attention)

 

I’m not listing solutions here. My aim is for you to become aware of the core deficits.

 

To work on the core deficits of autism, you can find more information in this article.

These need to be remediated in order for our children to become independent.

 

2. Work on dynamic intelligence

 

Difference-static-and-dynamic-intelligence

Image credits: Dr Steven Gutstein, RDI Connect

 

Let your child think.
I remember how my first consultant Joyce Albu called me a ‘thief’.
When she saw how I prompted Mohit at every step, she commented I was stealing his thinking.

 

As mothers, we want our children to look and behave perfectly.
However, learning is messy. It takes time. And it takes making many mistakes for our children to learn effectively.

 

Go ahead. Let your child make mistakes. It’s not a bad thing.

 

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Eventually, building dynamic intelligence will lead your child to independence.

 

3. Don’t prompt. Scaffold instead

 

A prompt accompanies the instruction you’ve just given your child, in order to facilitate your child in getting it right.

 

A scaffold on the other hand, facilitates your child’s thinking and problem solving abilities.

 

For example: If a child is having a problem opening a packet of uncooked Maggi noodles, a prompt (you cut with ______), will help the child get a pair of scissors.

 

Whereas if I say, ‘I wonder what you’re going to do? We need the noodles.’
The child might try to open the packet with his hands. If that doesn’t work, you can say ‘it’s a tough packet. What to do?’
The child may get a pair of scissors or continue to try tearing it open.

 

This is a scaffold as your intention is not for the child to get a pair of scissors per se. But it is to make him think through and problem solve the situation.
You are not fixated on the one object you think the child needs.

 

This image will elucidate:

 

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Read more about prompting and scaffolding in this article-

The more you work on ‘scaffolding’, the more independent in thinking, your child will become.

 

4. Build intrinsic motivation

 

External reinforcement may have immediate effects but they may not be long lasting. It’s not that it doesn’t have value.
But, if only extrinsic motivation is used, it becomes transactional and impacts the relationship between parent and child in the long run.
Definitely you can praise and encourage your child, but linking it to what s/he does could be detrimental.

 

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I came across this interesting difference between the two:

 

Intrinsic motivation refers to a behavior that is driven by internal needs. This motivation is sourced from within the individual and triggers the reasoning to engage in a behavior and by that reason it is naturally satisfying to that individual. On the other hand, extrinsic motivation refers to behavior that is driven by external needs (“rewards”) such as money, fame, score, etc. This type of motivation sourced from outside the individual and therefore has less powerful influence.

 

https://medium.com/productschool/gamification-unravel-the-secret-for-long-lasting-users-engagement-be12d50d3770

 

With regards to your autistic child or student, you can learn to build intrinsic motivation by following the tips in this article.

 

When your child is motivated and becomes a growth seeker, she will strive towards independence herself.

 

5. Keep your expectations high

 

While interacting with some parents, I get the feeling that they’ve ‘given up’ on their child.
This is the saddest feeling ever.

 

The prognosis of autism should no longer be bleak.
And because of the principle of neuro plasticity we should have immense hope for children, adolescents and adults.

 

Your child may not be the child you expected. But s/he is beautiful. Be present with this beautiful child.

 

This is a quote close to my heart- from an autistic individual.

 

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

 

– Jim Sinclair (on the spectrum)

 

Read the entire article here:

 

I haven’t mentioned skills of daily living and working on basic functional academics here. But of course, these definitely need to be taken care of and worked with.

 

I started with independence and happiness.
Once your child is independent, s/he will be able to enjoy a good quality of life and be happy too. Agree?

 

I may have not addressed the wish you wrote on the piece of paper (at the beginning of this article)

 

Feel free to reach out with your questions and comments. I would love to understand what you want your child to achieve.

 

Happy World Autism and Acceptance Day.
Why should we limit this to just one day of the year?
Let this be a 365 day exercise in support and acceptance of our children.

 

Kamini Lakhani

Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 25 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.

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